UK Community Advisory Board (UK-CAB) on HIV firstname.lastname@example.org
The UK Community Advisory Board (UK-CAB) is a network for community HIV treatment advocates across the UK.
The UK-CAB has three main aims.
- To develop and strengthen a UK network of HIV treatment advocates. We do this using a confidential email forum that links all members.
- To provide expert training on current treatment issues. This includes the chance to meet with doctors, researchers and pharmaceutical companies. We do this with regular training workshops and by publishing all related material online.
- To ensure there is effective community representation on formal structures that affect our care. This includes guideline panels, research studies and national commissioning groups. All representatives, including on the Steering Group, are elected by CAB members.
It is easy to join the UK-CAB. Membership is open to HIV positive people and community advocates who are not directly connected to pharmaceutical companies.1 A working email account is needed to join.
Individuals join the UK-CAB as members in their own right. Many members of the UK-CAB are linked to a wide range of organisations in the UK. Members also include advocates that are not linked to organisations, and HIV positive people who want to use the training offered in the workshops.
The CAB is run by a steering group (SG). These are elected UK-CAB members who coordinate the programme for meetings and the annual CAB development.
Treatment advocates’ network
This online group will help connect members across the UK. This includes a confidential discussion list (these posts are only for UK-CAB members) and an open announcement list (that is online as a public forum).
The forums enable the group to contribute to clinical trial design, comment on treatment guidelines, communicate with other advocates and keep up to date with reports on the latest research. Members can publish personal opinions and view or forward information from other organisations.
Meetings and expert training
The core programme includes four national meetings a year, roughly every three months. The content for meetings is decided by the steering group.
Each meeting includes presentations from experts, feedback from recent medical conferences and training on practical and technical issues.
Speakers include leading doctors and researchers, representatives of pharmaceutical companies and experienced advocates.
Meetings are attended by 25-35 people. These are interactive meetings, with questions, discussions and time to network. Transport and accommodation costs are paid for participants who live and work outside London. 2
Presentations and reports from workshops including pre-meeting reading are posted online for all meetings. These are open access documents.
The UK-CAB has run four residential training courses for new members.
Previous courses were run in August 2017, February 2016, September 2014 and October 2013.
These are residential courses for 12-15 members that run for 2 to 4 days.
These courses are dependent on additional funding, including from the Lottery Fund.
Guidelines panels, clinical research groups, commissioning bodies and other structures that affect our care
We believe that HIV positive people and their advocates should be involved in all aspects of our medical care. This was an early demand included in the Denver Principles.
We also believe that community representatives should be elected by the community and should work actively across the communities that are affected to represent the broad range of our broad interests.
This involvement includes input into clinical guidelines and the design and management of clinical trials. It increasingly includes commissionng of services through NHS and other structures.
The UK-CAB helps ensure these positions genuine represent the community (rather than being picked for us).
The UK-CAB elects and selects representatives for many clinical trials and guideline writing groups (including BHIVA and BASHH). Each position usually has two advocates that share this responsibility, often pairing an experienced advocate with someone wishing to develop their expertise.
What is a CAB?
CAB stands for Community Advisory Board.
Although a CAB can becomes involved in many different subjects, they most commonly relate to medical research. A CAB enables people who are directly affected by an illness to provide community input into the design and management of clinical studies.
CABs were an early demand of HIV activists in the US to be directly involved in research. Since then, some CABs have been initiated by the community and others have been developed formally by research groups.
As a response to activist demands, by 1990 the US National Institute of Allergy and Infectious Diseases (NIAID) had formally included community representation in HIV research. This included using CABs in the two largest publicly funded HIV research groups: the AIDS Clinical Trials Group (ACTG) and the Community Programs for Clinical Research on AIDS (CPCRA).
Since then, many other research centres, hospitals and other networks have developed the model of formally including CABs in their research.
The UK-CAB is an independent community-initiated CAB. It was founded in 2002 by activists at HIV i-Base as an umbrella organisation to connect HIV activists across the UK. It was loosely modelled on the European Community Advisory Board (ECAB).
For a history of CAB involvement in research see this useful paper from 2001: The role of Community Advisory Boards: involving communities in the informed consent process.
- From 2011 to 2019, the administration costs for the UK-CAB are covered by HIV i-Base out of the core i-Base budget.
- The residential training course in 2016 is funded by a grant from the Lottery Fund.
- From 2008-2011 the CAB was supported by an educational grant from the Monument Trust which has allowed us to employ a part-time administrator.
- From 2002 to 2008, running costs for the UK-CAB were supported by HIV i-Base, with pharmaceutical company funding to cover the costs of meetings.
We have always asked pharmaceutical companies of currently prescribed HIV medications to support the direct costs for UK-CAB meetings.
This is to cover travel and accommodation for members coming from out of London, plus the cost of catering, for four meetings a year. This industry funding helps support the CAB as a national project. A list of supporting companies since the UK-CAB was established in 2002 and from the most recent two years is included below. 3
The UK-CAB membership and Steering Group decides the content for the programme of meetings and agenda for these meetings. When the UK-CAB meeting with pharmaceutical companies about their current products and future research, the decisions for which companies to invite and the agenda for these meetings is made by the UK-CAB.
We similarly ask independent researchers to actively involved the UK-CAB in planning studies and ongoing research. We ask that community involvement in research be included in the budget of grant proposals so that some of the CAB work can be supported in this way by independent research.
- Directors and employees of pharmaceutical companies involved in research into HIV treatment and diagnostics, or employees of agencies providing PR, marketing and other professional services for these companies may not join the UK-CAB. We work closely with industry, but the UK-CAB is a community-based network, and it is important to respect this boundary.
- UK-CAB cannot provide any funding for people travelling from outside England, Wales, Scotland, Northern Ireland, Isle of Man or the Channel Islands.
- Since 2002, the UK-CAB has received support towards meeting costs from the following pharmaceutical companies: Abbott Laboratories, AbbVie, Boehringer Ingelheim, Bristol-Myers Squibb (BMS), Gilead Sciences, GlaxoSmithKline (GSK), Janssen-Cilag, Koronis, Merck Sharp and Dohme (MSD), Roche Laboratories, Theratechnologies, Tibotec, Pfizer, ViiV Healthcare.
- Since April 2014, the UK-CAB has been supported by AbbVie, Bristol-Myers Squibb (BMS), Gilead Sciences, Janssen-Cilag, Merck Sharp and Dohme (MSD) and ViiV Healthcare. This funding is unconnected to the programme and content of meetings.
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